Good deliberation Raymond De Vries Center for Bioethics and Social Sciences in Medicine University of Michigan Medical School Ann Arbor, Michigan
If the principles of deliberative democracy were to be more fully realized in the practices of bioethics forums, the decisions the participants reach would be more morally legitimate, public-spirited, mutually respectful, and self-correcting. Volume 27, Issue 3, pages 38–41, May-June 1997
Yes, but:
F23: I can understand why you [support the use of surrogate consent], but I think when you get to individual scenarios, you have to really stop and think...Is there going to be a scenario where the risk is so high that we would not as a society ever want to have a surrogate make a decision? . . . Now let me finish. I can see you’re trying to answer me, but really think about this...Are we ready as a society to say, “Okay. It’s okay to have surrogate consent for a relatively high-risk scenario...” You might be willing to push yourself in a higher risk scenario than you might be as a surrogate. M20: This is not an argument. This is an exercise from my standpoint. If you and I were married and I was the patient, and there was low risk in research, do you feel that society should let you make that decision if I couldn’t? F23: Yes, yes.
M20: ...Let’s take it up another notch. I’m the Alzheimer’s patient. I cannot make a decision on my own...There is high risk involved in the research...Should society allow you, my wife, to make a decision regarding my participation? F23: See, that’s where it gets fuzzy for me because... from a societal point of view, ...it would have to be that proper risk- reward ratio, and I think that would be up to societal debate.
F23: I can understand why you [support the use of surrogate consent], but I think when you get to individual scenarios, you Civil disagreement have to really stop and think...Is there going to be a scenario where the risk is so high that we would not as a society ever want to have a surrogate make a decision? . . . Now let me finish. I can see you’re trying to answer me, but really think about this...Are we ready as a society to say, “Okay. It’s okay to have surrogate consent for a relatively high-risk scenario...” You might be willing to push yourself in a higher risk scenario than you might be as a surrogate. Societal point of view M20: This is not an argument. This is an exercise from my standpoint. If you and I were married and I was the patient, and there was low risk in research, do you feel that society should let you make that decision if I couldn’t? F23: Yes, yes.
M20: ...Let’s take it up another notch. I’m the Alzheimer’s patient. I cannot make a decision on my own...There is high risk involved in the research...Should society allow you, my wife, to make a decision regarding my participation? Societal point of view F23: See, that’s where it gets fuzzy for me because... from a societal point of view, ...it would have to be that proper risk-reward ratio, and I think that would be up to societal debate.
Acknowledgments • Funders • Colleagues Scott Y. H. Kim • National Institutes of Health (National Institute on Aging: Amy Stanczyk R01AG029550) Ian Wall • Greenwall Foundation Faculty Rebecca Uhlmann Scholars Award in Bioethics to David Knopman Scott Y.H. Kim Paul Appelbaum • National Library of Medicine: Kerry Ryan G13LM008781 Laura Damschroder Michele Gornick Susan Goold
Assessing quality • Structure • Process • Outcomes
Assessing quality • Outcomes • Structure • Process
1. Outcomes: Does deliberation DO anything? Well yes….
Public opinion about return of incidental findings from genome sequencing (preliminary findings) Survey 1 Survey 2 (post-deliberation) Percent agreeing with policy to withhold findings regarding adult 11.0 43.1 onset diseases (n=65) Χ 2 = 4.71, p < 0.001
So something happens, but… is it the informed and considered opinion of the (appropriate) public?
2. Structure • Who? …is at the table? [representative] • What? …information is provided? [free from bias]
Information: putting the “informed” in “ informed and considered public opinion” • Learning new information • Understanding and applying information • Use correct information • Use on-site experts • Impact of information on opinions
Learning new information (SBR) 17-item knowledge questionnaire* Mean (95% ci) Survey 1 (pre DD) 11.5 (± 2.6) Survey 2 (post DD) 14.5 (± 2.3) p < 0.001 Survey 3 14.1 (± 2.6) p < 0.001) (after 1 month) *Level of knowledge about AD (prevalence, risk factors, course of disease, treatment options), purpose and types of clinical research in AD, ethical regulation of clinical research, and current policy regarding surrogate consent for clinical research.
Information: putting the “informed” in “ informed and considered public opinion” [qualitative measures] • Understanding and applying information • Use correct information • Use on-site experts • Impact of information on opinions
Surrogate based research: F39: Requiring research advance directives would be ideal, and more education might bring more people to do that, but in reality, it’s a very small percentage as far as how many people actually go through . . . Everybody knows they should have a will. Everybody knows they should have a durable power of attorney, but very few people . . . percentage might have it. [Using information] F35 : Like if you’re donating an organ, you already know exactly what you are going to be doing and you’ve weighed the ethical question out. I think [the expert] is saying that when it comes to research, you don’t know what they’re going to be doing, and so you don’t know if you would have agreed with it ethically or not. [Using analogy]
Return of incidental findings: I don’t know . . . I kind of feel like that with all of this, there’s so many unknowns and the degree of this or that is so unknown . . . Like why are we causing ourselves all of this stress? Like why don’t we wait maybe . . . I mean, I could also argue against what I’m saying too, but maybe we should just wait until we have a lot more information and then like now, just sort of do the pre- decision . . . “Oh, when we get to that point, let’s decide this.” But for right now, I feel like it’s like it could be catastrophic to have these sort of partial, maybes, ‘this could happen’, ‘we don’t know’. (ID-02) [Impact of information on opinion]
We have the right people and they are informed , but… Are we getting the considered opinion of the public?
3. Process 1. Equal participation 2. Respect for the opinions of others 3. The adoption of a societal perspective 4. Reasoned justification of ideas
Equal participation (SBR)
Respect for the opinions of others (SBR) ( scale of 1–10 where greater number indicates more positive response )
Respect for the opinions of others (counter example) M21: If your son’s death could result in saving millions of lives, you wouldn’t love those people more than you would love your son in order to give him up for others? M20: I don’t think I would be willing to offer my son or daughter to save millions, thousands. M21: My God did that. M20: Yeah. Well, I’m not God.
The adoption of a societal perspective (SBR) F44: ...the conclusion that I came away with is that if surrogate...consent does not become acceptable in this area, that there will essentially be no meaningful Alzheimer’s research. It seems like that would be a train wreck for our society. So it seems as though we almost have no choice but to have some form of surrogate consent...
Reasoned justification of ideas (SBR) F15: I look at the 6 out of 18 persons that have permanent problems. Out of 300 people, 18 developed brain inflammation; 6 of the 18 had permanent problems— seizures, headache, vomiting. To me, that’s a little high risk, and I’m going to go with M14. I don’t think society should allow surrogates to make that decision.
Thinking about deliberation Nagging questions
Says who? And what is the historical situation and social location of that “who”?
* Why now? Why the shift from expert to public bioethics? * Whose opinion? Does deliberation deliver public opinion?
The ideal: Expert opinion Public opinion
The hope: Expert opinion Public opinion
The real? Expert opinion Public opinion
Worth worrying about: • Self-selection of deliberators • Bias in the information provided • Processing of the results
Thank you rdevries@med.umich.edu
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